Families united by Down syndrome walk

When her daughter was a year old, Alicia Johnson decided to participate in the local Buddy Walk, the fundraising event for Down syndrome.

Lori Gilbert

When her daughter was a year old, Alicia Johnson decided to participate in the local Buddy Walk, the fundraising event for Down syndrome.

"I was reluctant to participate," she admits.

"It's a club you don't want to be a member of," explains Kelly Erdmann of Stockton, who, like Johnson, has a daughter with Down syndrome. Johnson arrived at Victory Park, though, and was surprised to find friends had contacted other friends and family members and more than 100 were there to walk with the family.

"I couldn't stop crying," Johnson said.

That was five years ago, and she expects the tears to flow again when she, husband Anthony, Sophie and her brothers, Ethan, 8, and Lucas, 3, travel from their Escalon home for Saturday's New York City Buddy Walk, sponsored by the National Down Syndrome Society.

A photograph of Sophie, now 6, was one of the images selected by the organization for the video presentation that will be shown on the screen in Time Square in association with the walk.

"Oh, I'll cry," Johnson said.

She won't be alone.

Erdmann, whose 2-year-old daughter Aubry's photo was selected for the video for a second consecutive year, guarantees it.

"We saw kids obviously going through cancer treatments," Erdmann said of her experience last year. "They were bald, and there were people of all different ages with Downs living, succeeding, being included. I cried."

The national event isn't just about tears of joy. It's an uplifting day for families who live with Down syndrome.

"It's a very odd moment when you're ... standing there and suddenly look around and realize everyone around you has Downs, and is going through what you're going through at different stages of your life," Erdmann said. "I remember being horribly terrified when we first found out (Aubry) had it. I was walking next to a mom last year and saw the look on her face and I gasped."

It was a look Erdmann said she had seen on her own face when her daughter was 4 months old, the age of the woman's baby.

"I told her, 'I've been through what you're going through, and you're going to be OK.'

"She said, 'Really?' Isn't that cool how everyone around her is going through the same thing?"

The Buddy Walk does more than bring families together. It celebrates the lives of those with Down syndrome. The video from 2009, available for viewing on the NDSS website (buddywalk.org) shows people of all ages doing every imaginable activity, from swimming to getting married.

Both Erdmann and Johnson are raising their daughters in the belief that every activity is an option for them.

Sophie Johnson, who loves swimming and dancing, started kindergarten this year at Van Allen Elementary School.

"At this point she's mainstreamed," said her mom, an education specialist who oversees home-schooled students. "She's not even receiving resource help. She's receiving speech help, but she's doing very, very well. Her teacher said she's doing amazing. She participates, interacts, talks."

She even learned to pronounce the difficult name of her teacher, Ms. Franceschetti.

The little girl is a role model for Erdmann, who dreams of Aubry going to college just as she expects her other daughter, 3-year-old Emalie, to.

"I'd love it if Sophie can be an encouragement to other people, to be a bright light," Johnson said.

Sophie is the apple of her daddy's eye, Johnson said. A photo of him holding her, taken by a professional photographer, is the one Johnson submitted for inclusion in the video. It was selected from the thousands submitted each year since the video was first created in 1999.

Erdmann submitted a photo she took of Aubry eating cookies on the beach in Kauai.

She was still a baby at the time of the photo. She's an active 2-year-old now, running and playing and keeping up with her older sister.

Erdmann was surprised when Aubry's photo was selected for a second consecutive year and has promised her husband, Mark, not to enter another one next year.

They're delighted to join the national walk for a second time, though, because the feeling of inclusion is so great.

"The day before you look around and don't see anyone with Downs," Erdmann said. "You're very alone in a very big city. Then suddenly they're all around you and you're a little piece in a very big puzzle."

Connecting with other families and being part of the big Buddy Walk is only part of what Johnson is anxious to experience.

"I'm so excited she's in this video," Johnson said. "It shows people living normal, healthy, great lives. I feel Sophie is living a great life. I feel so proud she was selected. I want people to know there's no difference."

Doctors weren't sure Sophie had Down syndrome when she was born. It took blood tests to check the chromosomes a week later to make the determination. The Johnsons have raised her as they have their boys.

"We've only had to be a little more patient," Johnson said. "She can hang with all her little girlfriends. Not once do I ever feel sad or jealous or anything. She is so special to us.

"I feel like we were chosen to have her."

It's a sentiment the Erdmanns have expressed, too.

Saturday's walk in New York City gives them a chance to be with parents from around the country who most likely feel the same way.